Ectodermal Dysplasia Awareness Month

February 2026

It’s that time of year again—Ectodermal Dysplasia Awareness Month is here!

February is recognised globally as ED awareness month, a time where we can all come together to shine a light on Ectodermal Dysplasia (ED), and we need YOU to help make this the most impactful month yet.

Every year, we see incredible support from our ED community, who help spread the word, raise much needed funds, and share stories of hope. But we need even more voices, more actions, and more awareness this time around.

Why ED Awareness Month Matters

Ectodermal dysplasias are rare and often misunderstood. Many people living with ED face delayed diagnosis, limited awareness among professionals, and challenges accessing appropriate care and support.

ED Awareness Month aims to:

Improve public and professional understanding of ectodermal dysplasias
Highlight the real-life experiences of people living with ED
Reduce isolation by connecting individuals and families
Advocate for better recognition, care, and support
Celebrate the strength, resilience, and diversity of the ED community

By raising awareness, we help ensure that Ectodermal Dysplasia is recognised, understood, and taken seriously — in healthcare settings, schools, workplaces, and wider society.

What Happens During ED Awareness Month?

Throughout February, the ED Society and the wider community take part in a range of awareness and fundraising activities, including:

Sharing information and educational resources
Community storytelling, where individuals and families share their experiences
Fundraising activities suitable for all ages and abilities
Wearing blue to show support and raise visibility

Two key dates during the month are:

International ED Awareness Day – 20th February
Rare Disease Day – 28th February

These dates provide important opportunities to shine a spotlight on Ectodermal Dyslpasia and rare conditions more broadly.

Making ED visible

ED Awareness Month is about visibility, understanding, and connection. By coming together each February, we help ensure that people affected by ectodermal dysplasias feel seen, heard, and supported — not just during awareness month, but all year round.

4 ed society staff stood looking at the camera wearing blue for international awareness day

Here’s how YOU can get involved:

There is no single “right” way to take part in ED Awareness Month. Every action — big or small — helps make a difference.

Participation looks different for everyone, and all forms of support are welcome.

Spread the Word

Share facts and information about ED on your social media.
Post about your own experience with ectodermal dysplasia – you could share your story with friends in a video or photo on social media (don’t forget to tag us)
Use the hashtag #EDAwarenessMonth on social media to help get the conversation started.
#SharingIsCaring – telling others about your experiences with Ectodermal Dysplasia is crucial to raising awareness of the condition.
Change your profiles on social media to one that promotes Ectodermal Dysplasia Awareness! Why not use our ED Awareness logo?

Fundraising

Whether it’s a virtual event, coffee morning, bake sale, a walk, run or a bit of dancing, your fundraising efforts will help us continue our important work.
Take part in our #SweatItOut For ED Challenge – 28 miles (or more) in 28 days – get in touch to sign up.
You could buy some ED merchandise……. help raise awareness by showing off your new purchase from the ED Shop.

Donate

Every donation helps us provide resources, support, and drive awareness for ED. Whether it’s a one-time gift or a regular contribution, your generosity keeps us moving forward. Click here to donate.

International ED Awareness Day

We encourage our ED community to show their support by wearing blue on 20th February, and sharing a photo on social media with the hashtags #InternationalEDAwarenessDay and #EDAwareness. A simple gesture that can spark meaningful conversations! Also – get family, friends, and work colleagues involved by having a wear blue day at work in return for a donation.

Rare Disease Day 28th February

ED Awareness Month also connects with Rare Disease Day – a worldwide campaign highlighting the impact of rare conditions and the importance of equity in diagnosis, care, and treatment.